This is a blog about epilepsy. I have lived with seizures for 25 years now and I want to share my experiences to allow others with epilepsy a chance to compare their experiences to mine and to allow those without epilepsy to understand further the condition and how it effects one. I had the VNS device implanted 4 years ago and have posted on that extensively. Please feel free to comment and I will try to respond.

Thursday, March 29, 2007

This article sent to me in the comments (thx matt) is pretty interesting. MIT engineers have figured out ways to control neurons using light and modified genes. It looks like it has a long way to go before it can help with epilepsy, but I am hopeful! Check it out:

Conversly, it reminds me of the novel, Snow Crash, by Neil Stephenson. A computer program flashes a pattern of lights into a programer's eyes which causes them to die. Great book - great author - always about 20 years ahead of his time.

Wednesday, March 28, 2007

Yet again I am starting another blog. I like to write about a variety of different issues, but I feel that the best blogs are those that focus on a specific topic. So I plan on continuing to blog about epilepsy here while starting a separate one on philosophy, physics, and religion. Stop by at emeriol.blogspot.com

Tuesday, March 27, 2007

Wake Forest Baptist Medical Center is getting a MEG device that scans the brain for activity and can map it on an MRI scan. It is pretty complicated, but essentially it makes a map of the brain that can identify the exact location for surgery. Below is the description from WFBMC.

MEG measures the magnetic fields created by electric currents generated by the brain’s neurons without the aid of injected radioisotopes or even attached electrodes. An array of 260 magnetic sensors surrounds the head, allowing induced brain magnetic potentials to be recorded from the entire head. These magnetic signals are then projected onto the patient’s own MRI scan, making it possible to localize a given function to a precise portion of the brain. MEG is used for the presurgical localization of critical brain regions (such as the location of language or motor function) and to help locate the site where epileptic seizures begin.

Nerve cells directly generate the magnetic signals detected by MEG, as opposed to other functional imaging tests such as positron emission tomography (PET), single photon emission tomography (SPECT) and MRI, which record secondary changes in blood flow or glucose utilization from which nerve cell activity must then be inferred. Therefore, MEG measures changes and activity not detectable by these other tests. Unlike electroencephalography (EEG), MEG is unaffected by intervening tissues such as the scalp and skull, so signals from deeper areas of the brain that are not detectable by EEG can be identified with MEG.

By identifying the precise locations within the brain that are responsible for the senses, language and other vital processes, doctors can ensure preservation of these functions by avoiding these important areas during surgery. The non-invasiveness of MEG permits it to be used for repeated follow-up measurements without adverse effects.

Thursday, March 15, 2007

On March 31, the Epilepsy Foundation will be hosting the first-ever National Walk for Epilepsy. As many as 5,000 walkers, including Greg Grunberg, star of NBC’s “Heroes,” DJ Hapa, and the “New York Subway Hero,” Wesley Autrey, will convene at the National Mall in Washington, D.C., to celebrate one of the greatest events ever for the epilepsy community. The goal is to help eliminate the stigma associated with epilepsy and raise more than $1 million for research toward a cure. More information is available at www.walkforepilepsy.org.

Monday, March 12, 2007

The GoalThe object of the settings is to cause your nerve to send signals to the brain. The electrical energy sent to the nerve from the generator has to be enough to cause the nerve to “fire”. Kind of like a spark plug. One key thing to understand is that not everyone’s nerve NEEDS the same amount of electricity in order to cause it to send a signal. This is why the settings need to be adjusted for each person individually.

Unfortunately, there is no real clear chart that says that indicates what setting each person needs. Fortunately, there are some studies that rule out various settings.

Signal FrequencyStudies have been done that show that stimulation to the Vagus Nerve at frequencies of 10 Hz or less do not cause the nerve to send signals. So, your signal frequency should be around 20 to 30 Hz. I keep mine at 20.

Signal ON TimeThe Signal On Time should be set to 30 seconds. Although I have seen a few studies that have set it to shorter On Times, the standard is 30. I would keep it at that.

Signal Off TimeI read about a lady who’s psych dr. set her off time to 3 hours! Because it went off so infrequently, she was completely stunned whenever it went off. Don’t let that happen to you. This setting should be between 5 minutes and 1.1 minutes. In addition, the Signal Off Time should not be less than the Signal On Time. I have mine set to 1.1 minutes off.

Output Current & Pulse WidthThe two settings that seem to have the most direct impact on side effects and efficacy are the Output Current (OC) and the Pulse Width (PW). One study I have read shows a direct correlation between the two settings and age.

A typical setting that doctors use will be 500 PW and then increase the OC in .25 mA intervals until it gets to 1 or 1.5 mA… regardless of the person or what side effects it causes. Don’t let them adjust your settings this way! Each person is different and needs different settings.

Start with a 130 PW and .25 OC. This is as low as it goes. If you can’t feel it, bump up the PW or the OC one notch until it gets a bit aggravating. Don’t let them put you on a setting where it physically hurts or it causes you to choke. When you get it adjusted up, the VNS should be annoying, not painful.

EfficacyRemember that the goal is to get your nerve to activate and send a signal to the brain. Start by slowly increasing your settings. Each time, increase them only to the point where the side effect is annoying, not painful or choking to the point of not breathing during activation. Over time, the annoyance will reduce and hopefully within a few days, you will barely notice it.

It will take a while before you start to get any results… if it works for you. You may even have to wait a whole year. Slowly increase your settings over the first few months. Make note of how many seizures you have. The VNS can cause some people to have more seizures. I found that at a higher pulse width and current, I had more seizures. When I lowered it, I had less.

Greater Efficacy over TimeThe VNS has somewhat reduced the number of seizures I have, but has definitely reduced the intensity of my seizures. For example, I had a Tonic-Clonic seizure last month, and for the first time, I did not stop breathing. My recovery time after the seizure was immensely reduced. Instead of days or hours of recovery time, I was able to function after only an hour of rest. Amazing.

Thursday, March 08, 2007

I started this blog because I enjoy writing and I felt that I could provide some insight into epilepsy that isn’t found anywhere else. I think that I have achieved my goal, but unfortunately, epilepsy is a very small topic upon which I have posted over 250 entries. It has been over a year now, and keeping the topic fresh and interesting is quite challenging… and at times tedious. Ug. Woe is me!

Well, enough of that. Thanks to anyone who took the time to listen to me whine and moan. I’m sure I will come up with something more interesting tomorrow.

Friday, March 02, 2007

Epilepsy.Com has posted a few medication sheets on common AEDs that are more helpful than the stuff handed out by the parmacy or drug companies. I checked out the one for Lamictal (one of the AEDs that I take) and it had some info of which I was unaware.

Epilepsy.Com has a lot of great info and seems to do a better job promoting awareness through their webiste than does the Epilepsy Foundation.

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What is Epilepsy

Epilepsy is a disorder characterized by recurring seizures, which are disturbances in the electrical activity in the brain. Seizure types range from a momentary disruption of senses to a loss of consciousness and violent movements that can last for minutes. There is no single cause for epilepsy; however epilepsy can sometimes be associated with an illness, head injury, or abnormal brain development. It is estimated that 1-2% of the population has epilepsy, and of those, approximately two-thirds respond well to medical treatment.